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cheerleader wrote:....but we're coming up on 3-6 months since patients are treated, and this is the time when the endothelial thickening happened in my Jeff and a few others...

Cheerleader, for easil confused and foggy headed people like me, can you explain what this term is and what action Jeff took? Many thanks x

OK...this is long. Please forgive me. Jeff had his left stent re-ballooned twice. The first time at 3 months, the lining was a bit thick at the very base of the stent. The second time, at 8 months, the vein just wouldn't stay open. The vein is not clotted, it just collapses after a month or two due to exterior pressure (a neck muscle) and defers to a large established collateral behind the jugular. His right has remained open and flowing at 100% (whereas it was at 20% prior to angioplasty) and Dr. Dake and Jeff believe he is functioning well with this current situation--a good right and collateral left. He had headaches for a few months earlier in the year, which are now gone, and he had pulsatile tinnitus from the right side being so much stronger than the left, but that is resolving now as well.

Still no fatigue, no heat intolerance, no new lesions, no MS progression and he feels good. Jeff decided to wait out any more angioplasty until more is learned. He may someday need open neck surgery, or maybe not. He's taking a day at a time, and tells me almost everyday he's so glad he had the procedure done....even with the issues on his left side he's thrilled to have energy, to sleep well, to be participating in life again.

But Jeff is and always will be an independent mind...he wanted this for himself after meeting with Dr. Dake. And believe me, he makes his own calls on his treatment--still taking Copaxone and exercising every day for at least an hour. He takes supplements, Plavix, eats the Swank Diet and is doing what he can to keep the blood flowing.

If I've learned anything through all of this, it's that this is seriously not a one-time treatment. For those that are ballooned in the jugular veins, there is 50% restenosis, and I remind people of this fact on FB all the time. There are also issues with restenosis in stents. I had no idea there would be international travel for angioplasty when I started writing....and that scared me and Marie and others who had gone to Stanford.

I get anger from posters on FB when I caution people, like I'm raining on their parade, or being "negative." No one wants to believe that they'll restenose...they assume it will be the "other guy." But 50/50 odds are a pretty high chance of needing more angioplasty. And then there are the risks of clotting in a stent or even without one. Or risks of blood thinners or angioplasty. I started a thread on risks after we had two serious tragedies last year. But it gets ignored.

I still believe that CCSVI is strongly related to MS, I still believe it comes before the lesions, I still believe we need to find the best way to help pwCCSVI achieve better venous function...but I'm not a vascular doctor. And they are the ones who will fine tune the protocol. As Dr. Cooke told me at Stanford after Jeff was treated....ten years from now they'll have this procedure perfected and it will be done at the Mayo clinic. For those who can wait, please do. And remember to thank the guinea pigs like Jeff and Marie and Holly and Sharon and Lew and so many others for helping the learning curve. They are my heroes.
cheer

Thank you for taking the time to write that out and explain re: Jeff's experiences, some new information there that I wasn't aware of. I've read all I can about the risks and warnings over the last year. It can be a struggle to read a lot of such a huge forum and process it with painful eyes and brain fog. So a comprehensive answer like that has been a very informative further. We have to make our own choices but every bit of information about people's personal experiences really do matter when we reach the time of having to say yea or nay when talking to our surgeon in the near future. Again, thank you x

Cheer, thank you for your words. I could not agree more. Luckily I can wait at the moment but I can understand the urgency others feel. But reality is it is still real early days. It will take years and it will be a bumpy ride. Personally I am thankful for everyone who has treatment, does research, posts links or does anything else that contributes towards CCSVI. Even if it is to prove it wrong.

Fliege wrote:Hi Mila,Just one question:Could it be a relapse from the MS and did you get cortisone or are you just waiting - sitting it out. - certainly with the bloodthinner !Fliege

Fliege, to answer your question yes it was a relapse, actually according to my neurologist it was 3 relapses during 4 months after procedure but i sitted 2 of them out. Then I took corticosteroids in the hospital when it turned out that I have 3 active lesions. After steroids treatment all numbness disappeared for 5 weeks but now it is starting again.

As for my thrombosis.
I am still on warfarin but to be honest I am very confused at the moment.
I was diagnosed with thrombosis at Ameds clinic but since I had my treatment in Euromedic (Simka team) I decided to go for my next check-up visit there as well.
To my surprise dr Simka said that yes in fact I have 3 mm blood flow in the stent but it is not caused by blood clots, and it is not thrombosis so I should not take warfin because this drug is hard to control.
He said that my vein grew through the stent (I cant find the English term for this condition) and that at the moment it has 3 mm diameter but it is perfectly fine because above and below the stent my vein is also 3 just mm wide and the blood flow is stable and shows no signs of reflux. He just want to see me more often to see it the vein will narrow more or not. So next meeting with Simka in November.

At the moment I am really confused and do not know who is right. Simka, who is more experienced says my blood flow is fine but I had 3 relapses and 3 active lesions post-procedure and Ameds docs says it is thrombosis.
Well next week I am gonna have ultrasound at a third independent location and will see what their point of view will be.

Thank you to everyone who as given feedback on this, especially to Cheerleader and Dr. S.

In hindsight, I wish that I had not gotten stents put in, given that in Canada there are so few doctors willing to give follow-up care because treatment for CCSVI is considered experimental. Now, finally after 2 months, someone is seeing me, but he is at a loss. He says that the stent is completely clotted and that it is not endothelial thickening, becasue according to him, it is too soon for the endothelial thickening to have occured. Does anyone know how long it takes for endothelial thickening to occur? Also, Dr. S, do you think that there is a chance that the clot dissolves, given that i am now on Heparin?

This is the thing. I previously went from scared-of-stents to feeling that I would leave it to the surgeon to decide and feeling much more confident about them. Now I have to say i'm afraid that I feel once again the risks are too high with regards reports of conflicting and sporadic follow up care and knowledge of the right course of action should the stent clot or grow through.
It's that word, "permanent". I would love to be well, I would love just a little relief, but right now I would rather know there are options even if i'm ill rather than risk putting myself in a situation where there may be no options in the future by agreeing to something permanent. Therefore, reluctantly i'll only be agreeing to ballooning for the time being. If I have to go back at a later date two, three or four times, so be it. (and i'll cry if they tell me on the table I need a stent! lol)

I genuinely hope that everyone who is having problems with their stents is managing to get through to their doctors easily and receiving attentive care and advice xx

MSLiberation wrote:Mila -I am sorry to hear that you are having so many problems.

Thank you to everyone who as given feedback on this, especially to Cheerleader and Dr. S.

In hindsight, I wish that I had not gotten stents put in, given that in Canada there are so few doctors willing to give follow-up care because treatment for CCSVI is considered experimental. Now, finally after 2 months, someone is seeing me, but he is at a loss. He says that the stent is completely clotted and that it is not endothelial thickening, becasue according to him, it is too soon for the endothelial thickening to have occured. Does anyone know how long it takes for endothelial thickening to occur? Also, Dr. S, do you think that there is a chance that the clot dissolves, given that i am now on Heparin?

I think it is possible that the clot can "lyse" but the likelihood of reclotting is high. why?
unlike arteries which receive nourishment and oxygen from blood vessels that feed the arteries (called the vasa vasorum, latin for "blood vessels of the blood vessels", veins receive their oxygen and nourishment from the circulation directly, especially the inner cells. When the blood vessel clots, those inner lining cells are at much higher risk of dying and that leads to further clotting if the clot is opened up.

Also i think that the reason that the stent clots is that there is slow flow through it in the best of circumstances and even less flow when you are sitting or standing (just like healthy people). Thus a foreign body in a slow flowing to non-flowing vein will lead to clot formation.

I am not saying that all patients get clots from stents, but the risk is high for the duration of the life of the patient.

So I have decided not to use stents after hearing all these problems UNTIL there is data to the contrary.

cheerleader wrote:Dr. Sclafani and all--as you know, veins can clot even without a stent. The act of angioplasty and ballooning has inherent risk of damage to the endothelial lining, and stenosis and clotting can occur without a stent. This is a real risk, and something that needs to be fully disclosed and discussed with patients prior to treatment.I am so sorry to read about these events, but we're coming up on 3-6 months since patients are treated, and this is the time when the endothelial thickening happened in my Jeff and a few others.

Hang in there, Mila and others reporting the same. Good thoughts going out-cheer

cheer
i think that the best alternative to stenting is a really good angioplasty, using probably larger balloons than most IRs use for standard venous angioplasty because these lesions are resistant to dilatation by the nature of the stenosis, fused valves, stiff collagen in the wall....

Also IRs really need to back off dilating high lesions at the outset. Too many times high ballooning gives disappointing appearance and this leads to stents that may not be necessary.

cheerleader wrote:Dr. Sclafani and all--as you know, veins can clot even without a stent. The act of angioplasty and ballooning has inherent risk of damage to the endothelial lining, and stenosis and clotting can occur without a stent. This is a real risk, and something that needs to be fully disclosed and discussed with patients prior to treatment.I am so sorry to read about these events, but we're coming up on 3-6 months since patients are treated, and this is the time when the endothelial thickening happened in my Jeff and a few others.

Hang in there, Mila and others reporting the same. Good thoughts going out-cheer

cheeri think that the best alternative to stenting is a really good angioplasty, using probably larger balloons than most IRs use for standard venous angioplasty because these lesions are resistant to dilatation by the nature of the stenosis, fused valves, stiff collagen in the wall....

Also IRs really need to back off dilating high lesions at the outset. Too many times high ballooning gives disappointing appearance and this leads to stents that may not be necessary.

Nonetherless, it is necessary to speak a truth to a patient.
Greetings
Rici

cheerleader wrote:Dr. Sclafani and all--as you know, veins can clot even without a stent. The act of angioplasty and ballooning has inherent risk of damage to the endothelial lining, and stenosis and clotting can occur without a stent. This is a real risk, and something that needs to be fully disclosed and discussed with patients prior to treatment.I am so sorry to read about these events, but we're coming up on 3-6 months since patients are treated, and this is the time when the endothelial thickening happened in my Jeff and a few others.

Hang in there, Mila and others reporting the same. Good thoughts going out-cheer

cheeri think that the best alternative to stenting is a really good angioplasty, using probably larger balloons than most IRs use for standard venous angioplasty because these lesions are resistant to dilatation by the nature of the stenosis, fused valves, stiff collagen in the wall....

Also IRs really need to back off dilating high lesions at the outset. Too many times high ballooning gives disappointing appearance and this leads to stents that may not be necessary.

Dr. Scalfani et al.
It has been almost 4 weeks since my angioplasty. i have question as to what you mean by "Also IRs really need to back off dilating high lesions at the outset. Too many times high ballooning gives disappointing appearance and this leads to stents that may not be necessary." [ By high do you mean high in the neck? or are you referring to not trying to balloon the diameter too large? Or am i missing the point completely?

I ask because my LIJV was severely stenosed, with collaterals and reflux back into the transverse sinus, and the ballooning was very painful. Therefore, he was not able to use a balloon as large as he would have liked i think. But The result was the IR was able to enlarge the lumen to get good flow, without increasing the outer diameter of the vein. How does this fit into what you are saying?

Do you think chances of restenosis occurring are increased or decreased given my scenario?
Best,
Jan

cheerleader wrote:Dr. Sclafani and all--as you know, veins can clot even without a stent. The act of angioplasty and ballooning has inherent risk of damage to the endothelial lining, and stenosis and clotting can occur without a stent. This is a real risk, and something that needs to be fully disclosed and discussed with patients prior to treatment.I am so sorry to read about these events, but we're coming up on 3-6 months since patients are treated, and this is the time when the endothelial thickening happened in my Jeff and a few others.

Hang in there, Mila and others reporting the same. Good thoughts going out-cheer

cheeri think that the best alternative to stenting is a really good angioplasty, using probably larger balloons than most IRs use for standard venous angioplasty because these lesions are resistant to dilatation by the nature of the stenosis, fused valves, stiff collagen in the wall....

Also IRs really need to back off dilating high lesions at the outset. Too many times high ballooning gives disappointing appearance and this leads to stents that may not be necessary.

Dr. Scalfani et al.
It has been almost 4 weeks since my angioplasty. i have question as to what you mean by "Also IRs really need to back off dilating high lesions at the outset. Too many times high ballooning gives disappointing appearance and this leads to stents that may not be necessary." [ By high do you mean high in the neck? or are you referring to not trying to balloon the diameter too large? Or am i missing the point completely?

I ask because my LIJV was severely stenosed, with collaterals and reflux back into the transverse sinus, and the ballooning was very painful. Therefore, he was not able to use a balloon as large as he would have liked i think. But The result was the IR was able to enlarge the lumen to get good flow, without increasing the outer diameter of the vein. How does this fit into what you are saying?

Do you think chances of restenosis occurring are increased or decreased given my scenario?
Best,
Jan

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